Sunday, August 15, 2010

Some Unsolicited Advice for the National Multiple Sclerosis Society

The fall issue of the National Multiple Sclerosis Society's magazine Momentum includes an article entitled "Safe Travels through the Internet", in which I'm quoted quite extensively (click here for article). I'm very thankful to be included in the article, along with fellow bloggers Lisa Emrich (click here) and Trevis Gleason (click here), and was quite surprised when I was approached and asked to be interviewed. I think the writer did a terrific job on the piece, which is extremely informative and should be very helpful, especially for those just getting introduced to the online MS universe. The entire magazine is a quite good, and is definitely recommended reading.

After Momentum came out last week, I received several e-mails expressing surprise that I would participate in a magazine put out by the NMSS, the inference being that since I'm a proponent of CCSVI, and have written extensively about my largely unenthusiastic views of Big Pharma and their MS products, that I should shun any association with a group that many perceive as the enemy, and one which numerous patients view as simply a shill for mainstream MS interests and the big pharmaceutical companies.

It struck me that this is a huge problem for the NMSS, and for the MS population. The fact that a significant percentage of MS patients view the largest and most visible nonprofit MS advocacy group as an adversary is a disconnect that both those struggling with the disease and the organization that is supposed to be dedicated to fighting the malady can ill afford.

The NMSS (and their sister Canadian organization) have long been targets for many in the MS online community. That enmity has reached new heights in the last six months, however, after the organizations' admittedly slow, clumsy, and misguided initial handling of the CCSVI issue. Even after the Canadian and US MS societies dedicated $2.4 million to CCSVI research, dissatisfaction with the organizations grew, largely because the research that was funded is more academic than practical, as no treatment studies received vital financial grants. This brought online gripes against the societies to new levels, with accusations flying that the studies funded were at best simply delaying tactics, and at worst intentionally designed to disprove the CCSVI hypothesis for the benefit of the MS societies’ Big Pharma masters.

Of course, the NMSS does much more than fund MS research. The society runs a host of valuable programs that benefit the MS community on both the local and national level, among them support groups for both patients and caregivers, government advocacy, MS education, financial assistance, scholarships for those living with MS or their children, employment resources, and help with procuring assistive devices. As for the research the society does support, a quick perusal of the NMSS website reveals that the society funds many innovative and cutting-edge projects (click here), most of which would otherwise get no funding at all.

Still, a large portion of the MS population regards the society as a monolithic entity, an instrument only interested in maintaining the MS status quo, enriching the society itself, and pushing the use of the hugely profitable immunosuppressive and immunomodulating drugs currently offered by the big pharmaceutical companies.

Since I started this blog 18 months ago, I've gotten to know several employees of the National Multiple Sclerosis Society. It may surprise some readers that these folks are not firebreathing ogres with glowing eyes, forked tongues, and pointy tails, but compassionate human beings who fervently care about ridding the world of Multiple Sclerosis and helping patients stricken with the disease.

With all of the above in mind, I thought I'd offer a few suggestions to the NMSS in an effort to help build a bridge between the organization and those who find it highly suspect.

My first suggestion is a radical one, but one that I think would almost instantly restore credibility to the NMSS as an organization wholly devoted to finding a cure for Multiple Sclerosis. The society should simply stop taking any funding from the pharmaceutical companies that market MS drugs. I've been told that donations from pharmaceutical companies represent less than 5% of the financial support received by the NMSS, and if this is true, rejecting this funding shouldn't be a crippling blow to the society's bottom line.

Additionally, I believe that if this audacious step was taken, much of the revenues lost would be made up by an increase in donations by patients and their loved ones who currently hold the society in complete disregard. Online, patients regularly talk about asking everyone they know not to make donations on their behalf to the National Multiple Sclerosis Society. By making the bold move of rejecting pharmaceutical money, the society would quickly win back many of the patients who are, under current circumstances, now lost to it forever.

Thumbing through the most recent edition of Momentum, the quarterly NMSS magazine, I counted 13 pages of advertisements paid for by the pharmaceutical companies, in a magazine comprised of a total of 70 pages. In fact, Pharma ads were practically the only advertisements in the magazine (there were also a few from medical device manufacturers). Given these numbers, and the fact that for many individuals Momentum is their major point of contact with the NMSS, it isn't difficult to see how the magazine's readers might get the impression that the NMSS takes its marching orders from Big Pharma.

I'm sure that the higher-ups at the NMSS can't be blind to the fact that taking money from companies that make billions annually marketing obscenely expensive drugs that ameliorate MS symptoms but do nothing to address the still unknown cause of the disease appears to be a conflict of interest for an organization whose stated vision is "A World Free of MS". Such a world would send many of the companies that market MS drugs quickly into bankruptcy court. Multiple Sclerosis has become the goose that laid the golden egg for these corporations, entities whose mandate it is to constantly drive profit, and that by law are beholden to their stockholders, not to the patients who consume their products.

My second suggestion would be to let us see some of the real-life human beings that staff the organization's national and local offices. Those that I've had contact with are empathetic, caring human beings, and many of them have had their lives impacted significantly by friends and family who suffer from MS. The society desperately needs to shed its monolithic image, to show the MS community in a very real way that it is not made up of faceless automatons, but by concerned people who, as one told me, would gladly give up their jobs if a cure for MS could be found.

The NMSS needs to humanize itself, and a strong dose of the personal touch is needed. A starting point might be to feature the profiles of select society employees on the NMSS website and in Momentum Magazine. Much more good would be served by devoting a few pages of the magazine to profiling real life, sympathetic NMSS employees than to advertisements for Avonex, Rebif, or Copaxone.

Lastly, I would ask the NMSS to play nicely with the other much smaller MS nonprofit organizations that dot the MS landscape. I understand that the competition for funding is fierce, especially given our current economic climate. But the NMSS has developed a somewhat cutthroat reputation among the nonprofits that compete with it, all of whom share the goal of ridding the world of MS. The NMSS is the de facto face of Multiple Sclerosis to the public at large; it's the only MS organization most of the population has ever heard of. Certainly there is room for smaller, more specialized organizations to have a place at the funding trough. This isn't a zero-sum game. As a matter of fact, it's not a game at all. People's lives are at stake, and by working with smaller organizations, rather than against them, a cure for this beast called MS will surely come about sooner. As was said during the civil rights movement, keep your eyes on the prize.

I hope these suggestions are taken in the spirit in which they are given. The lack of faith in the NMSS by the very population it advocates for is reaching the crisis stage in some corners. Direct action is needed, and despite the misgivings and suspicions held by some MSers about the National Multiple Sclerosis Society, the society can be at the forefront of affecting real change, by heartily rejecting the status qou and showing the community an energetic new face. The NMSS must redefine itself to the MS community, to the mutual benefit of both…

36 comments:

My experience with the NMSS has been really good, but I've only been diagnosed for a couple of months. Their website really helped me realize having MS might not be the end of the world.

But I can understand how if your at that end of the world place it might take more than kind words and podcasts to please you.

I mean this seriously, because I don't know, but have you investigated whether it is realistic in the medical community to move so quickly from idea to surgical studies? Are you asking the NMSS to do something the medical research community in the US wouldn't allow anyway?

Matt-I'm not asking the NMSS to do anything in regards to research in this post, only reporting the feelings of many MSers. The fact is, though, that the medical community in the US is already performing the "liberation procedure" at an ever increasing rate, and many PwMS are paying many thousands of dollars for the procedure. Blinded studies of this treatment would answer many of the questions surrounding CCSVI in a fast and efficient manner.

I would suggest that people should continue supporting the NMSS if they want to cure EAE mice of a self-limiting disease that is induced in the lab, but that if they think CCSVI is promising, you should put you time and money elsewhere.

I don't think anyone at NMSS or Big Pharma has a pointy tail, but I think both will go to great lengths to protect the status quo and help EAE mice.

A major function of organizations such as NMSS and most of the government medical research supporting organizations is to relieve Pharma of the burden of supporting risky, early research.

If the research is fruitful, then Big Pharma can acquire it cheaply.

You suggested looking at the wonderful research that NMSS is funding. I did. It seems to me there is far more scientific evidence available in support of CCSVI than anything that is being funded. I admit, I only quickly skimmed the projects they are funding and looked on PubMed to see how widely they have been discussed.

Call me a cynic, but I will bet you a pint that most of the CCSVI research that NMSS has funded with the Canadian society is hellbent on proving either that everyone or no one has CCSVI and in fact, they will probably pop open the champagne if the studies split this way "seriously questioning whether CCSVI exists or is relevant to MS."

I do agree with you that NMSS's funding is important, to EAE mice who after 60 years, deserve a cure, or even a drug that has a little more direct effect than side effects.

Ed-thank you for quickly adding a comment that backs up my description of the sentiments held by many MSers. I'm not so sure we disagree as vehemently as you suppose. I'm urging the NMSS to change and turn away from the status quo precisely for many of the reasons you enumerate. The fact is that the NMSS has the infrastructure and reach to affect profound change in the direction taken by MS researchers. I'm urging them to get on board, leave the past behind, and take some bold steps towards finding a cure, and not contribute to an ever growing collection of highly profitable treatments that have as much effect on the underlying MS disease mechanism as two aspirin…

When I give away some of my hardly earned children inheritence to charity I study extensively 2 factors:1) what is the cause (orphenage, medical ...)2) how much of my dollar is ultimately going to the cause.

MS Societies in the UK and North America are at about 50%, some of the least efficient in the world.

That is for every 1 USD/CAD/GBP given to the society 50 cents/pennies are paid out in salaries.

A minute portion of the remaining amount is handed out in research.Given that the MS Society primary objective is to find a cure, one can only remain puzzled by this divestment strategy.In sum, if MS was a private company, it would have been bankrupt long time ago.

On the other hand, I am happy to see that smaller more devout organisation (Direct-MS for example), pay themselves 0 in salary!

That can be assimilated in financial terms in large listed corporation versus start-up. As you can imagine, a startup is leaner, more efficient and more passionate about its business.

For this (and only this) reason, I will never be giving away cash to the MS Society.

I must admit being surprised that you didn't bring this point forward Mark in your otherwise excellent article.

Congrats to Marc and Lisa for being beacons of light and rounding out the whole picture. MS organizations do provide a place for people to get information. As we gather our own info, we draw from places in reach. By showcasing bloggers, they have led to some great starting points and thereby works with all sources of info about MS. Drug companies do represent a form of disability delaying tactics immediately available. We should not discount their contributions. Some people find relief in taking those drugs. MS seems to invoke war between factions and the bloggers have a role in assembly of new frontiers in cure or even definition of MS. I believe there is room enough for everyone in fighting MS. I decided early on as I was nauseated by MS society glossy photos. That real blogs like Marc's, Lisa, Herrad's and others I follow help me get through the day. Also that MS society,etc does their thing raising awareness and money. Thanks Marc for your great contribution.Mary

Excellent post which comes close to a few things I mentioned to NMSS staff last September. Thanks for bringing this up.

Just by featuring us as bloggers was a bold move as it is somewhat of an endorsement. An endorsement after which they have no control over what we say or do. Very scary for the organization, I'm sure.

Since I'm a numbers type of gal, I took a close look at the advertising in this edition of Momentum. I will assume that it is representative of all editions. Using the "2010 Momentum Rate Card and Media Kit" I calculated some advertising numbers.

$421,271-total advertising income for one edition$355,050-ads from pharma/device, 84% of total

Assuming same ads are placed in four magazine editions, qualifying for 11% discount, the advertising income for the year would total: $1,499,739. Actually not so much.

For 2008, the total revenue reported for the home office was $106,253,354. Total revenue for all NMSS offices combined was $233,385,545.

Advertising is very powerful, carrying more weight in perceived influence than it's monetary value. I don't know what it costs to produce and mail the magazines, but I wonder if the advertising just covers that.

More would need to be done to begin to change the perception that NMSS is only interested in maintaining positive relationships with pharma companies. That's a tough one to break.

I like your idea of featuring actual employees and bringing a human face to the organization. However, I'm afraid that too many skeptical MSers might find that cheesy and insincere. I'm glad I'm not in public relations. This would be a difficult challenge.

Anyways, I always appreciate when you share your thoughts. We all benefit from having our minds challenged as well. thank you!

Tony Fonda, let me correct you on your erroneous assumptions about US charities. Most charities have to raise the money they give away or spend on programs & that requires at least one employee. Most non-profit employees are very dedicated, but most also have to earn a living. If you expect $0 compensation then you assume only the wealthy work in philanthropy. Having worked for 3 non-profits & now on the other side (over 20 yrs combined) I know most employees are not wealthy & make significant financial sacrifices to work for a non-profit. Passion for their cause is not diminished by years, in most cases it is enhanced by the experience. You insult a vast number of people by equating less devotion with longer experience.

Unless a "start-up" is completely funded by a wealthy individual or entity it takes years to have the financial power of an established charity let alone cover the costs of the charity's existence. Even if the computers, printers & phones are donated, there are still expenses incurred to use them. It is extremely difficult, even in a good economy, to raise funds from people, corporations or foundations when you have no track record in administration, fundraising or grantmaking. A “start-up” will rarely be leaner, “more” efficient or “more” passionate. The established non-profit is more likely have a healthy endowment (stock market variable), a pool of regular donors and staff with the knowledge & experience to successfully grow that pool--it is best positioned to keep administrative costs (including salaries) well-below the 50% you assume and below the 25% that is considered good.

When researching where to send your charitable dollars, the best tool available to the general public is www.charitynavigator.org. They rate US charities (a work in progress) with the highest ratings going to those with the lowest administrative/fundraising costs based on IRS tax returns--these are verifiable facts, not assumptions. This is a great tool for avoiding scams that pop up after major disasters or the charities that spend more on a splashy black tie event than the cause they purport to support.

I find this topic absolutely wonderful reading and wouldn't it be great if some suggestions were considered. I do have a huge beef regarding their mission statements and being there for the cause for six decades. It blows my mind on how many millions/billions have gone through these MSSs with almost 48% going to administration alone. I am suspect just on that alone. The thing that gets me is the MSSs has had 60 years to show us something in their research and to this day have not even come close to the find of CCSVI. NOTHING.

Seems I comment on every blog you do Marc, hope you don't mind lol! I think this is a great post and nicely handled. It is hard to say what you just said, without coming across negatively to the NMSS but my thought is you did a great job.

Now in my own experiences with MS Dreams, I have seen the side of the NMSS where they will not co-exist with other MS charities, which I feel is wrong. This experience and a little bit of luck is why we have decided to work with the Myelin Repair Foundation, which is a wonderful organization devoted to MS treatment. We work together very well and why shouldn't we? Our goals are to help others with MS and we do so in totally different ways.

I do hope the NMSS reads this and truly considers your ideas. As nice as it would be for them to drop the big pharms, I am not sure they will do so. For example when you go to Avonex.com you will find a link to MS resources. guess who? NMSS lol. I am sure each drug has this (didn't have time to look at all of them) and this is why I think they are lifers.

Keep up the great work! I was not even online to read any blogs but yours always catch my eye 8-)

Tony-thanks for your comments. The fact of the matter, though, is that (according to the Charity Navigator website) the NMSS spends only about 15% of its funding on administrative and fundraising expenses, and devotes about 85% of its revenue to administering the many programs it supports. The website gives the NMSS a four-star rating (the highest possible) for organizational efficiency. The figure you state (50% devoted to salaries) is apparently completely mistaken.

These numbers compare quite favorably to some of my other favorite MS nonprofits. The Myelin Repair Foundation spends 29% of its revenues on administrative and fundraising activities, the Accelerated Cure Project spends about 24% of its revenues on administrative and fundraising activities, and the Multiple Sclerosis Association of America devotes over 31% of its income to the same activities. All of these organizations do fantastic work, and have my complete support, but the NMSS has them beat as far as percentages of revenues devoted to the research and other activities it supports. Facts are facts…

Travelogue-I'm in complete agreement with you regarding the "glossy" face that the NMSS puts on the disease. Too much emphasis on MS patients climbing Mount Everest, in my opinion. Of course, stories such as these can be of great comfort to those newly diagnosed with the disease, but for those of us struggling with progressed disease, such tales seem ludicrous and in some ways insulting. Thus my plea for the NMSS to redefine itself and the image it projects.

Jonathan-thanks for your comment, and I too appreciate the often astounding contributions made to this blog by folks leaving responses.

Lisa-thank you so much for the detailed breakdown of the advertising in the revenue it generates in Momentum magazine. For sure, more would need to be done to change the image of the NMSS than simply eliminating big Pharma advertising from its magazine, but for going all big Pharma contributions would be a bold step in the right direction. I'm sure with a little hard work many other advertisers could be found for Momentum, and as you say, the benefits they would accrue in the perception of the organization would far outweigh whatever financial hit they might take by disassociating themselves from the pharmaceutical companies.

Anonymous-thanks for your very astute observations, and coming from someone who has worked both sides of the nonprofit world you should certainly know of what you speak. Thanks too for mentioning the Charity Navigator website, which is an extraordinarily valuable tool.

Shirley-as I commented to Tony, above, your figure of 48% going to administrative costs is well off the mark. The actual figure is closer to 14.5%, for both administrative and fundraising costs.

It is astounding that the vascular defects now called CCSVI have been missed/ignored by MS researchers for all of these decades, but let's also keep in mind that we still have no hard proof of the veracity of the CCSVI hypothesis. We have extremely compelling anecdotal evidence, but so far Zamboni's results have not been replicated by independent researchers. I'm a believer, but it certainly remains to be seen just exactly what kind and how much of a role CCSVI plays in the MS picture.

I wish I could be a fly on the wall in the NMSS public relations meetings. There must be chaos behind those walls. The climate is very chilly and distrustful. How will they work to change that? Will they even care? It will be interesting to see if the donations take a big hit this year. I don't think most MSers feel they are evil, but just not working in our best interests.

MS Dreams-thanks for your comments, they are always appreciated. As another nonprofit working on behalf of MS patients, it's interesting that you echo the sentiments of some others that I have spoken to, who confirmed that the NMSS doesn't like to play with other MS nonprofits. As you say, you guys are all working towards the same goal, and a culture of competitiveness can only breed ill will and in the long run does help to no one.

Anonymous-yes, those PR meetings must be quite interesting. As I said in my piece, in some MS circles the disconnect with the NMSS has reached a crisis point, and it will take some hard work to repair the damage that's been done.

Just wanted to double check the figures on the NMSS's administrative and fundraising expenses, and did so on the Better Business Bureau's website. The numbers I stated above were confirmed. Here's the link to the BBB info:http://www.bbb.org/charity-reviews/national/health/national-multiple-sclerosis-society-in-new-york-ny-597

Good article as usual. I am not a fan of the NMSS due to the fact that if a support group sanctioned under them raises money it must go to the society and is not used in the local area to help support group members. They do not give any help to support groups unless it is for the larger organization. (walks, biking etc)And lastly, you have to have very low income in order to get assistance to live with MS (for mobility equipment, lifts etc) My thinking is that it would be to help you because you have MS.

After my last visit to my neurologist, I left with prescriptions to treat: depression, occasional urinary incontinence, and a frozen shoulder! Couple this with my once a month Tysabri and twice a day Ampyra and I'm quite a "Pharma Queen." There is ABSOLUTELY NO INCENTIVE to find a cure for me or other cash cows like me.

While I do believe the front line of the NMSS are kind people who want a cure to be found, the board rooms are a different story. People with MS or any other chronic debilitating illness should be livid. Hey...I think they are.

The Pharmaceutical connection goes beyond the NMSS 5% statistics, what we don't hear to much about is the NMSS Venture capital company called Fast Forward that has teamed up with EMD Serono (Merck KGaA) where the NMSS shares in the upside (like a venture capital company) relating to all the new drug therapies that are fast tracked for approval via the FDA. Merck pays their managment expenses in return for first rights on selecting investments in early stage biotech companies. If sucessful both partners have a winning and profitable situation.I don't think the NMSS will be giving up this relationship anytime soon, also helps explain why they are never too excited about non drug treatments like CCSVI angioplaty. The MS Society of Canada has been taken to task now a few times on their selective editing of their public presentations and their lack of transparency. I'm afraid that their lack of enthusiasm in regards to CCSVI and their direct relationship and influence from some very powerful MS Neurolgists and Pharma has caused such alienation that I'm not sure it can be repaired.

I'm just a nobody who was just diagnosed with MS this past April. I've been on Avonex and have had one heck of a time growing lesions here. I just had my second round of MRI's and my doctor promptly promoted me to Rebif.I recently received my first Momentum magazine. My MS came on like a tornado that hasn't let me go, and that's where I read about your website. I've not had much exposure to any of this - and, while I realize I am not the norm, I found the ads for everything interesting - because I feel like I'm cramming for a test and I don't know what questions to even study for! Every other month I seem to have new symptoms (I hope that stops soon!) and I'm not even sure what questions to ask or who to ask. So, I'm thankful for the Momentum magazine, and that I found your blog - and, frankly, even the ads were informative for me.

Marc, Thank you again for putting into words the thoughts that most of us with MS are always entertaining. I have become so cynical about the NMSS that I never even crack the cover of any of their publications. To me, finding the "cause" will ultimately lead to the "cure". The drug companies will never invest in this entity, their goal will always be to make money selling their disease modifying products. In that same light, people that work for MS publications or MS organizations will be out of work should a cure be found. Human nature tells me that finding a cure is not where they are going to put their time and energy. Like you have said in the past, these publications are happy to fill their pages with stories about how well someone is doing using one of the products advertised in their pages. Are we at the mercy of Univesity studies to come up with "the answer"? We can all hope that in the effort to find a cause/cure for another illness, that is more prevalent in society, they will accidentally find the answers to OUR questions.Eddie O

I knew nothing about charity before CCSVI. That was back when I thought they were looking for a cure.

A lot of glossy campainging is coming from the CCSVI end, that's a little concerning too.

Yeah, I feel the MS Society have the infrastructure to get things done.

Far too much exploitation going on, flying under the flag of a cause. It's giving me major doubts over the whole industry.

Trepanation is evidence enough for me that blood flow matters. CCSVI may only be a part of this but theres definately something going on up there.

I'm trying not to be cynical but there are just too many reg flags that would never be accepted in a non-caring industry.

60 years of help have made some families very rich. They have only known expansion. They have never been able to financially support themselves, despite the (highly paid) managerial experience over the years.

This is the government's job. The MS Society is only there because of their failure, followed by their siblings.

If MS Society have a direct line to government. It's time they got behind the public, not the other way around.

Im worried for the future of angioplasty because of the business interests. There seems far too much to find from this renewed theory.

They will be really be pissed if the parkinson society created them a new job only for that to be fixed too.

I think quack science will get them out of this and I'm more worried now than 6 months ago.

Marc - as always a very insightful post from you about a very important and complicated issue. You always make things so clear - a true talent.

Personally, I was very grateful for the NMSS and my local chapter when I was first diagnosed. I got very involved, served on committees, did the walks, raised funds, attended conferences and meetings, and learned a few things: a) the staff are really very caring people who are work for a small salary which they tell me is offset by the satisfaction they get doing meaningful work and helping others. b) all the volunteering in the world is never as valued as much as the large contributors who are lauded at every turn, lest they stop sending money. c) at the national level it's all about the money. I think the grass roots staff are stuck in a paradigm dictated by national and for us, the clients, it no longer works. Their response to the clamor for funding was a token - here ya go, now shut up. That attitude was the last straw for me. I have chosen to devote my time and money to working with the NMSAA. I've been an ambassador for 2 years and their focus is on helping individuals who need assistance. This is something I can get behind and speak passionately about. Yes, the other MS organizations also do this but it not the focus. Funding research is important but the NMSS needs to make some drastic changes, play well with others, and think outside the non-profit box. If they can do this, I'll be back but for now, no thanks.

On administrative costs I believe some people were referring MoneySense report posted December/ January 2010 issue which looked at the "ranks Canada’s largest charities by what they spend on administrative expenses." >http://www.moneysense.ca/2009/12/21/canadas-40-biggest-charities/

In this breakdown the Multiple Sclerosis Society of Canada was indicated to be at 48% for "% of revenue spent on admin., fundraising & mgmt."

Based on this stat one can appreciate being concerned. The source was Statistics Canada The financial data comes from the charities’ 2008 Canada Revenue Agency T3010 information returns.

I think most of the soldiers at the MSSociety are good people and would love se see a cure, I think it would be the upper level people that really dont want a cure. I think it would be great to not accept donations from Big Pharms....i think more people would donate(just like you said) but i still dont think they would help find a cure, whether they are getting the money from the big pharms or us. Actually with all the money and efforts that has been involved with MS (MS society, Big Pharms, Universitys etc.) through the years there should be a cure by now!! (i know bad spelling and granmmer)

Anonymous-I think we can all agree that the society needs to reform and rethink many of its practices. There are far too many MS patients disaffected with the very organization that is supposed to be advocating for them. Thanks for your comments.

Anonymous-I don't know if you've read my previous post entitled "The Medical Industrial Complex: Sick People Required", but I think you'd find it very relevant. As I've written before, capitalism is a wonderful engine for creating wealth and driving an economy, but it completely sucks when applied to the practice of medicine…

Anonymous-the NMSS makes no secret of its Fast Forward program, and provides links to it from their website. While it is easy to see how creating such a group could be a conflict of interest for an organization supposedly devoted to finding a cure for MS, one must also keep in mind that the medical research model in America is extremely dysfunctional, and many promising discoveries are left languishing in the lab for lack of proper funding. CCSVI is indeed a very promising hypothesis that I think will lead to a revolution in the way MS is treated and looked at, but I don't think it is THE answer for all MS patients. It likely plays a role in the disease of many who carry the diagnosis of MS, but there are certainly other issues at work in the MS pathogenesis. For this reason, programs like Fast Forward do play a vital role in moving promising laboratory discoveries through the arduous process it takes to get them into clinical practice. The Myelin Repair Foundation, one of my favorite MS nonprofits, takes a similar approach. Please read the Newsweek article at this link for a better understanding of just how broken our system of medical discovery is:

http://www.newsweek.com/2010/05/15/desperately-seeking-cures.html

Again, this is not to say that programs like Fast Forward shouldn't be questioned, but they also shouldn't be instantly labeled nefarious either.

Pennie-so sorry about your recent diagnosis of MS. Indeed, the NMSS is an invaluable source of information for those recently diagnosed. However, as you can see from the majority of the comments left here, many long-time MS sufferers are very disenchanted with the organization. Unfortunately, the NMSS has become part of the MS establishment, with close ties to entities that would suffer financial calamity if MS was ever cured. As an organization, the NMSS finds itself in something of a paradox, and in my opinion needs to redefine itself, and rid itself of any associations that cast doubt upon the sincerity of its mission.

Eddie-I'm in total agreement with you that the pharmaceutical companies have no incentive to work for a cure. I don't think evil is afoot, though, because the very system under which these companies operate offers no reward for cures, but tremendous financial gains for drugs that "maintain" patients, keeping them alive and well enough to continue taking pharmaceutical products. I'd refer you to my "Medical Industrial Complex" post from a few months ago for more of my thoughts on the subject…

Miyagi-I think you make a very good point that neither side of the CCSVI debate are angelic. People forget how much money stands to be made if CCSVI proves to be the real deal. That's why we see so many interventional radiologists chomping at the bit to get going doing the liberation procedure, there are billions of dollars to be made if vascular surgery can be of relief to MS patients. So to, the medical device manufacturers stand to profit enormously from stents, catheters, and other devices meant for use in hard-to-reach and treat veins. That's actually what gives CCSVI a fighting chance to be shown relevant. Unlike LDN, a compound which no one can make scads of money from, CCSVI does represent a fortune to be made by certain parties. Yes, big Pharma and neurologists will lose money, but interventional radiologists and medical supply companies stand to gain tremendously.

Ms Andisue-I sure hope higher-ups at the NMSS are reading some of these comments, because your story is testament to why they desperately need to change their ways. Thank you very much for your comment.

Scott-thanks for clearing that up. I'm not sure about the differences in the running of nonprofits between the US and Canada, and perhaps there's a reason that the Canadian MS society stands so much on administration and fundraising. I'll have to do some digging. Thanks for the link.

Jeff-one would think that more progress should have been made in the fight against MS by now. I think the concept of autoimmunity really took researchers eyes off of the real target, which should be the underlying cause of that autoimmunity. Hopefully, CCSVI will at the very least redirect research away from poking and prodding at the autoimmunity shadow and instead focus on the meat of the issue. Thanks for contributing to this discussion…

Hello,I'm new to your blog but felt I had to say something since I've been trying to cancel my subscription to momentun but have found no way out. The last issue had an article on medical marijuana which forgot to mention a number of studies, forgot to mention that sativa has been approved in canada and elsewhere ....I live in oregon where ms and problems with spacicity gives you a right to a medical marijuana card as long as the doctor agrees. Their article was like reading a new and improved version of "Reefer Madness" Their scholarship, if you can call it that, just simply sucks.Thanks for listening and I'm looking forward to more of your blog.Renee

Marc,I too struggle with the "glossy faces" and stories presented on the MS website. I applaud those that continue biking 100 miles and jogging 20 miles regardless of their MS. This may be encouraging to some, but to others like me where this monster is nipping at my ass I find it some times difficult to fathem. I guess displaying the bad and the ugly wouldnt encourage those with the disease though so a happy medium would be my suggestion. In my first walk my wife raised over $5000 and not that we were looking for accolades, but at least a pat on the ass would be nice. You would never have known her accomplishments by way of the NMSS point of view. Hard to believe just last Novemeber I walked 3 miles when today its 20' and rest... Thats another story...Those that contributed to that $5000 mostly friends and family are innondated with contributory mailings and phone calls. Maybe that is just what non-profits do? That is all fine and dandy but when a viable theory is introduced, CCSVI case in point, the NMSS cant poo-poo the idea, rather they should take a much more agressive yet bias stance so that they represent the root supporters of the organization-pwMS. Is the goal to cure or to modify? That is my question. Unfortunately we live in a society filled with greed, The Big Three, Enron, Kwame Kilpatrick, so believing anyone who handles large sums of money has become literally impossible. There always seems to exist this element of doubt in my mind as to whether or not revenues make their way to their intended purpose without lining pockets along the way. I just hope that this is not the case with our NMSS. Hope is all we have...Greek

Let us shed light on some facts. First I too when first diagnosed (1993) viewed MSS as the organization that would solve many problems re ms. I donated every year. Even the guy who came to show me how to inject myself said "oh they will find a cure for ms in five years." he said it would be big money for that drug company. i was hopeful and trusted MMS at that time. As time went by, with drugs that did not help but hinder me more, i began to see between the lines.There is an ex pharmaceutical rep on you tube who said 'THEY (PHARMA) IS NOT IN BUSINESS TO PUT ITSELF OUT OF BUSINESS.'" (exact quote) The MS Societies may have started with the goal; of finding a solution to ms, BUT NOT ANYMORE. It receives big big monies from many corporations, individuals, drug companies, not only in 5% (maybe higher, they won't show the books) drug companies pay for the magazine by advertising big time in it and those that provide assistive devices, ( a good thing for now). they employ over 30,000++ including doctors, researchers, upper management, lower management. mid managements, etc. Drug co.. are seeing it they dons't go away. Have you ever been in a mss patient conference WITH NO DRUG REPRESENTATION?? THEY PAY For everything, including all the (BAD GOODIES YOU ALL EAT) Anyone with any intelligence could see right through them. do they want to lose job security they now have, perks they get from Pharma??? It is BIG BUSINESS NOW, and they are now threatened by the revelation of venous issues. Watch Dr. John Murray on youtube from MMS conference addressing media in Canada. Listen closely to every word. see his deception, and nervousness, and watch his fingers rattling - I am educated, but you don't need to be to see the hypocrisy. ( I typed with one finger at a time - cannot type well now)

CCSVI is a condition that impedes blood flow back to heart. Ladies and gentlemen - hence through out body. The revelation is this:

Pooled blood in brain has no where to go thus more blood in brain cannot harm the brain. Deoxygenated blood and Iron deposits that cannot escape from brain is good because iron gives you energy. And Deoxygenated blood gives you tons of free radical - and that is awesome because it is F R E E (hope you got a good laugh).

History is being made - WE LOVE YOU DR. ZAMBONI AND ALL the doctors all over the world. YOU ARE MY MIRACLE.

The last dates on this blog are not very current but my search for ratings for nmss have led me here. My family and I have donated substantial amounts of money to the nmss ever since i was diagnosed in 1999 and up until last year have not needed to ask for any services. Well, last year I was in need and requested some assistance with purchasing a walking device (bioness). I got flooded with paperwork requests, did not get phone calls returned and was overall given the runaround. I did not walk in with my hand out, but I was in trouble financially at the time and needed help. I was set aside like someone who had not donated over 100,000 to the cause. This leads me to believe that the nmss does a great job taking in the money, but when it comes down to helping people with ms, they fail miserably. Try finding someone of decision making authority to talk to. so disappointing.

The NMSS is corrupt and only care about the bottom line, their funding....I have tried to get help from them and nothing....my life was destroyed by a crooked judicial system of unethical assholes and my former employers...The two teamed up to beat me but the NMSS supports them....while they SHOULD be protecting us sick with MS....they are bending over for the evil court sustem....I will fight until ALL Americans know we have NO true justice system in this country

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...